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He was given six months to live.  Then he changed DC

“I can’t tell you you don’t have ALS,” the doctor told him. “But I can ask you that question. If you have ALS, what do you want to do? You are 37 years old. You know a lot of people. You can tell the difference. “

He and Sandra began discussing the possibility of starting a new business while juggling the demands of parenthood and Brian’s deteriorating health. They did their research too. “We flew across the country and met with different groups to determine if there was a single group that was doing this thing right,” Brian told me. “It’s like a presidential campaign, you want to know if it’s the right thing for you.”

What they found was that, for all of its lofty goals, ALS advocacy lacked something fundamental: a basic understanding of how modern DCs work. Pulling on the sensitive chords can get you a press release, but legislative results require sustained commitment, strong fundraising, and personal connections.

Sandra, for her part, recalled the time she spent on the Hill when advocates had days “by plane” to meet with staff and advance causes. “They’re emotional, but that precise moment doesn’t move the needle,” she told me. The activists “built the wheel every time.”

The two decided to build something new. On January 22, 2019, they launched I AM ALS. Unlike establishment groups that focused largely on politics, it would be shameless to address the politics of ALS. And, contrary to what Brian would tell DeLauro, it would make a big bet that victims of ALS could indeed be committed activists, even as they braced for death.

The group would provide support and resources to those newly diagnosed. This would fund existing research and require lawmakers to spend more. But the holy grail would be convincing the government to allow patients with ALS better access to clinical trials and help foot the bill, something lawmakers and federal agencies had been reluctant to do for fear it would cost too much. , that the gain would be too uncertain and that they would divert patients from existing studies if new potentially groundbreaking studies became available.

“If you were to testify in Congress and the question was, ‘Give us a comprehensive overview of all the progress we’ve made on ALS and other neurodegenerative diseases since Lou Gehrig’s disease. [1939 “luckiest man”] speech, “the testimony wouldn’t take long,” said Rep. Mike Quigley (D-Ill.), one of the members with whom Brian worked most closely on the legislative push. “The point is, we had to pivot and take a different direction. “

To start the pivot, Brian turned to a kitchen cabinet of unpaid advisers who have helped him defend I AM ALS and connect him with key DC players. One of the first was Michael Slaby, who was chief technology officer for the Obama campaign in 2008, and currently serves as the group’s interim CEO. He hired Ben LaBolt, Obama’s press secretary for the 2012 campaign, to help with the communications work, set up semi-regular calls with other Obama alumni, and used his connections. with the Obama Foundation to bring the former president to release a video touting I AM ALS as a philosophical extension of the Obama campaign itself.

For the group’s board of directors, he got, among others, Dan Tate, an ALS patient himself and a founding partner of the lobby shop Forbes Tate Partners, who volunteered to help coordinate Core and Hill’s strategy. I AM ALS. And he hired a series of officials who worked at the intersection of biomedical research and politics for the day he himself was gone.

“One of the biggest challenges for ALS groups is that when the person who started the group gets sick, the group collapses,” Brian told me.

He hired several lobbying shops, including Winning Strategies Washington. At the company’s office in downtown DC, Brian worked occasionally. During one session – which he let me attend before the company staff kindly asked me to leave – the granularity of his involvement was fully visible. He didn’t just want medical experts to accompany defenders to the Hill, he wanted them to have data ready for the question he and Sandra knew they would get from a time-pressed legislative assistant: “Your story. is moving. But how is this different from stories 1, 2, 3 and 4? He wanted to target lawmakers who were working on defense budgets by enlisting veterans who suffered from ALS. (According to several studies, veterans are 1.5 to 2 times more likely to contract ALS than those in the general population.) He was keen to stress ad nauseam that ALS research may unlock cures for it. other neurodegenerative diseases, such as Parkinson’s disease and muscular dystrophy. Don’t ask for a moonshine, he stressed, ask for a scientific discovery.

The group helped secure some early wins, including getting the Pentagon to double its ALS research investments from $ 10 million to $ 20 million and then double it again to $ 40 million. They created an ALS caucus on the Hill. Brian personally delivered a letter and a stack of accompanying papers signed by 10,089 ALS activists to the FDA asking it to issue revised and long-promised guidelines on how clinical trials in ALS might be designed. The agency did so afterwards.

Through it all, Brian seemed to be everywhere. One day, over coffee, he casually dropped that he was in a hurry to speak with David Bradley, the DC media mogul and founder of two of Washington’s biggest consulting firms. At other times, he would chat with senior officials of the National Institutes of Health, or with Priscilla Chan, wife of Mark Zuckerberg and head of the Chan Zuckerberg Initiative, at the Aspen Ideas Festival, or with the commissioners of the Donald Trump’s FDA: first Scott Gottlieb then Stephen Hahn.

“A human rolodex,” said Eric Schultz, another Obama veteran who worked informally with Brian. “But it was not wasted. Many people want this to be available to them for prestige purposes. But it wasn’t Brian and Sandra.

The breakneck speed seemed unbearable. But Brian found it soothing to work, especially with other patients, where conversations didn’t require explaining what ALS was and how it affected people. He felt, in a way, responsible to them – not only because he had skills and connections that could be used to improve their lives, but because, at the moment, he was able to stand up. , talk and do things that made it easier for him to integrate into the rest of society.

But he also knew his clock was ticking. As we sat in a cafe in Washington during one of those first Hill blitzes, he mentioned the awe he felt watching other prominent ALS activists who were more affected by the disease than he was.

“You know you’ll be there,” Brian said. “But you don’t think about how you’ll be when you’re there.”

In June 2020, ACT for ALS has been officially introduced.

Unsurprisingly, Brian had done his homework. He scheduled a meeting with Senator James Inhofe (R-Okla.) Because a legendary football coach from his state, Allan Trimble, had recently announced that he also suffers from ALS. He worked with Senator Lisa Murkowski (R-Alaska) because her cousin’s husband had died of the disease. He collaborated on the idea of ​​the ALS Caucus with Rep. Jason Crow (D-Colo.), Who lost a cousin to ALS. He co-wrote a Fox News op-ed with Rep Jeff Fortenberry (R-Neb.), Whose wife’s brother had the disease and who, along with Quigley, is believed to be the main driver of the bill.

When Brian didn’t meet lawmakers personally, his group and the activist community pushed them, often aggressively. A Republican Hill contributor described it as “an advocacy torch.”

“You have to understand,” Fortenberry told me, “in terms of the small disease category, for an office to do that is a huge demand. We don’t have unlimited resources. Other offices could be nice. But they don’t have the capacity to handle it either. All of these things create obstacles and roadblocks. You have to have this almost unimaginable alignment for that to happen. And finally, it takes persistence on the part of people like Brian.

With Sandra as a media sherpa, Brian has transformed into an avatar of the cause. He did national television, used Twitter vehemently, and, after sitting down for another magazine profile while he and I spoke for this article, suggested as a fallback that we just write a book. When he told me more recently that he sat down for another magazine profile, his consolation prize was only slightly different. “If we don’t do the track,” he wrote, “I got 2 book offers today.” In December 2019, he showed up in Times Square, when I AM ALS took over two huge billboards there that displayed signs such as “ALS IS OVER If you want it” and “F * CK YOU ALS” “. The buyout of billboards was accompanied by an exaggerated Jerry Bruckheimer video promoting their promotion. In May 2020, Brian texted me saying his organization also got $ 350,000 to make a documentary, which is now 90% complete.

It wasn’t just for fun. Sandra wanted to change the perception of even a classic ALS story from tragic to hopeful. “No one is going to step up and help us if you shut them down with a depressing story,” she explained.

As his public personality grew, so did the expectations and demands around him. In one meeting, Rep. Eric Swalwell (D-Calif.) – whom Brian had come to know through mutual friends – called him the “face of ALS.” Brian reacted nonchalantly to the compliment. But after Swalwell left the room, he showed some unease. The campaign was not his alone. And while he desperately wanted to change the way the government combated diseases like this, it came at a personal cost.

“You know you had the honor of being in this room, but you have a moment when I would rather be anywhere except here,” he told me.

Brian’s body was deteriorating. He was using a cane and would soon be upgrading to a wheelchair. As the legislative process progressed – with more and more co-sponsors signing the bill and negotiations on the outlines of the Expanded Access Agenda advancing – he began to lose his ability to speak. Sandra stepped into the breach. On July 29, 2021, she gave her testimony for him at a hearing before the House Health, Energy and Commerce subcommittee. She called it, “our closing argument for our lives.”

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